On coping psychologically and understanding your ellipses...

I've been thinking a lot lately about the incremental changes I've made to my life since my decline began a couple of years ago. After having been severely affected by my EDS during my teen years, then emerging into adulthood with my symptoms subsiding, age has caused a second wave of EDS to come creeping my way. As an undiagnosed teen, I was scared by how my body seemed to break down and buckle at every turn, but as an adult with a matured sense of self I can tackle this new wave with a renewed perspective.

I have a HEDS/CEDS combo, and I was diagnosed in January this year after over a decade and a half searching for answers. I feel I still have youth on my side at 27, but in the last year or so I've had to really knuckle down and make some hard decisions and big changes to my lifestyle. At the time, every decision has felt like submission to EDS, but as I go along I've been making peace with those choices. 

I feel my EDS is mild in presentation, with daily subluxes, and dislocations only a few times a week. I don't rely on pain medication, not because I don't live with pain, but because I used a lot of pain meds as a teenager purely to get myself out of bed. These days I have somewhat of a psychological aversion to them. Codeine is my fallback, but to be honest I take them on really bad days once every few weeks, max. I have a huge (and growing) collection of braces and supports that I can reach for when my joints need some help, and I use those daily on an as-needed basis. Often I forget that I don't have boundless energy, and flop into a spoonless coma-like state to recharge. One day burning through spoons can equate to days spent lolling around uselessly, so pacing is definitely a skill I'm still seeking to perfect (for more on spoons, see my previous post!)

I definitely count myself as fortunate. I know what it's like to be bed bound for weeks, months, years. I know what waking up breathless in the middle of the night because my diaphragm collapsed is like. And I count my blessings every day that with a few measures, I can live my life in relative normality.

For me, dealing with EDS is as much about finding tricks and aids that help me get by on a physical plane as it is about coping on a psychological plane. One of the weird facets of my EDS blindsiding me at the age of 12 was that I knew I had to grow up exponentially quicker than my peers. It was a very conscious realisation, and it helped me understand what I was going through. A child shouldn't have to be so acutely conscious of their own childhood in that way, but I knew that what I was facing was going to require maturity far beyond my years. In this way, since the day I understood that, I've been very self aware of personal growth, and how important that is in dealing with EDS. EDS isn't something that happened to me, it IS me, but it does not define me. That's where I'm at now.

I still go camping... though a trip to the chiropractor is always required straight after. I still go on hikes... but I wear the most supportive boots and stop often, even when it's only a mile. I can still cook and clean for myself... I just need to save up some spoons first, and know that I might be useless for the rest of the day afterwards. I am a full time student that takes on extra work... and often that means foregoing a trip to the pub after class with my classmates.

Surviving and thriving with EDS is all about those ellipses. More than that, it's about embracing those ellipses. What comes after the ellipses isn't indicative of failure, it's just adaptation. Other's might not have the same ellipsis, or they might not have an ellipsis at all, but that doesn't matter. So what if yours might read "I can make it to the top of the mountain... in a wheelchair", or "I keep my house clean... with the help of a professional cleaner". We EDSers have to be many things (strong, feisty, compassionate, resilient), but most of all we have to be adaptable. I think coming to this understanding is the most valuable part of my arsenal yet.

On our connection to the Earth and ankle health

Though rather an odd combination, the two things in the title of this blog post - ankle health and our connection to the ground on which we walk - has been my preoccupation in the last few weeks. 

For one thing, I flew back to San Francisco three weeks ago, and the upheaval always gets me thinking about my connection to the land in one way or another. 

There's another thing that, in the past year or so, has also made me think about that connection. In the same way that I muse about my voice and my use of language to express myself when my jaw dislocates, I think about my relationship with the ground I walk on when something goes wrong with my ankles or my feet. 

As a child, I was always barefoot. As an adult, I maintain that my emotional wellbeing starts with connecting back with my environment, rooting back into the world on a very physical level. The root chakra has always been an important symbol for me, and I went as far as getting a very elaborate tattoo on my ankle that represents my vision of nature and beauty. Connection with Earth runs pretty deep for me.

There's another thing that, in the past year or so, has also made me think about that connection. In the same way that I muse about my voice and my use of language to express myself when my jaw dislocates, I think about my relationship with the ground I walk on when something goes wrong with my ankles or my feet. 

Let me elaborate.

In 2013 I took part in a gruelling 70 mile trek through the Jordanian desert mountains. It was an expression of movement, and a challenge I made to my body and its abilities. If I could rise to that challenge, I could do anything. It's the story I've told myself ever since my body started playing up when I was 12. 

Me, standing at the highest point on the Jordan trek

I got through the trek, but it had serious lasting effects, predominantly in my feet, although it also flared up an agonising bout of hip bursitis after scaling a mile-high mountain to reach the plateau on the second day, which I then had to push through until we reached Petra 3 days later. 

After that trek, my ankles started to regularly lock up, my toes develop excruciating pains almost every day, and I can't feel the tips of my big toes at all. On the face of it, my desire for a connection to the Earth, my challenge to myself, backfired. I have the best memories of that trek, but it left an indelible mark on my body. Another scar, another war wound. 

Thinking about those things underlines for me the importance of my ankles in my expression of movement. I could very easily have taken my body's reaction to that Jordan trek as a cautionary tale - don't spend five days hiking up enormous mountains lest you never feel your big toes again. The flip side of that thought is that I shouldn't engage in those activities, I shouldn't express myself through movement. For some, that's not possible or desirable, but for me, it's incredibly important. Denying myself that expression is a denial of part of myself.

So on to ankle health.

To ensure that I can live the way the my heart and mind desire, maintaining healthy feet and ankles are of paramount importance. I can keep moving with a dislocated shoulder, but dislocated ankles are a deal breaker. I've learned to seriously respect my ankles since that Jordan trek. They're both total divas, playing up at the first sign of trouble. While on holiday last week, for absolute no discernible reason, my right ankle developed flexor hallucis longus (FHL) tendonitis. 

At the time, I had no idea what the FHL tendon even was, and had no idea why suddenly I couldn't move my right ankle without a sharp, breathtaking pain emanating from my ankle. All I knew was that I had to nip it in the bud ASAP. It was a reminder that my body can pull the rug from underneath me whenever the whim takes it, and that we EDSers have to respect that, in the same way we must respect Mother Nature's ability to give and destroy. 

As my fellow EDSers know, if there's something that the internet doesn't know, it's probably not worth knowing. When I got back from holiday, my research for the cause of my ankle pain began. Within 15 minutes, I tracked down the cause and the current medical guidance on resolving FHL tendonitis. Turns out my instincts to rest and ice had been right, but it was good to know for sure I was doing the right thing to heal my body.

A week later, and I could once again move my ankle without the acute pain. And my first thought? To go for a walk. Up the side of Mt Sutro. Of course.

My neighbourhood to the lower right, with Sutro Tower sitting atop Mt. Sutro in the centre.

You might think that unwise (and you're probably right), but for me, it was asserting my freedom to move, my desire to express myself through motion. I have a killer pair of walking boots that support my ankles and I took breaks and stretched where I needed to, and made sure to listen to my body along the way. 

I also have a new weapon in my arsenal in protecting my ankles, particularly my oversensitive sinus tarsi and my extremely slack tendons and ligaments. 

Ultimate Performance Neoprene Ankle Support with straps

They are ankle supports that actually mimic the criss-cross kinesiology taping method that I use when my ankles are particularly painful. I took delivery of them yesterday, and I'm already loving them. Essentially they have the action of cinching in and supporting the joint where the connective tissues are unable to perform this function themselves. It means that when I'm in bed or sitting on the couch with my feet up that my ankles don't lie at the end of their excessive range, which puts serious pressure on the sinus tarsi, aggravating my ankle issues.

My legs up on the couch, before and after

Sure, the aids and tricks that I use to protect myself don't stop the bad days from happening, but if it means I have just that bit more confidence to keep living my life the way I want to, then I'll do it. I know the likelihood that EDS will continue to take away my ability to do the things I enjoy, but using things like these supports means I can slow down that process to some extent by protecting the joint.

On M.O.T's and what to expect from your first physiotherapy appointment

I'm home for the holidays, back in the UK visiting my family. Ordinarily, I live in San Francisco, which is wonderful, but it means that when it comes to healthcare I'm a long way outside my comfort zone. Back in the UK I have my Amatsu therapist, Bowen therapist, osteopath, GP, consultant, dentist, etc etc. In the States, I have my chiropractor... and that's it. More recently, I've found a massage therapist that is truly incredible, but I'll write more about that in another post.

When I come home for a visit, I take the opportunity to have what we in the UK call an 'M.O.T'. For my American friends, this stands for 'Ministry of Transport', but it's what we call our annual car check-up, which is usually around the same time we make sure the oil and washer fluid is properly topped up and our tyres are okay.

My personal M.O.T consists of, as a bare minimum, getting my eyes checked, going to the dentist, seeing my Amatsu therapist (remember that name, I'm going to be writing a whole post dedicated to Amatsu at some point), and then if I need to I'll see my osteo or Bowen therapists, but those treatments are more of a needs basis.

As of this week, I now have one more specialist to add to the mix... a physiotherapist. When I was diagnosed by Prof. Grahame he said I needed to be seeing a physio yesterday, the need was that great. I wondered if he was exaggerating... after all, in the grand scheme of things I think I do pretty well... I have chronic pain, yes, but it doesn't seem as life limiting as some others, and I'm certainly not in a wheelchair or bed-bound. To hear one of the world's leading authorities saying that I was in desperate need of seeing one of his specialist physios was surprising to me. Grahame was disappointed to hear I was returning to California four days after my consultation with him, and asked me to instead make an appointment for the earliest opportunity in June, when I returned.

That brings me to Thursday, when I finally had my initial consultation with my new physio, Kay Walls, when it became clear exactly why Prof. Grahame wanted me to seek help so urgently.

The appointment itself was at the St John St Elizabeth Hospital in St John's Wood, and I went privately in order to see one of the physios that Prof Grahame had specifically recommended. I've seen physios in the past who have been entirely useless, knowing slim to nothing about hypermobility, and therefore giving me totally inappropriate and unhelpful exercises. Their summation was that my pain and perceived weakness was due to lack of muscular strength, when actually I've always been physically strong, and it was actually the pain that was causing that perceived weakness, while my exceptionally hypermobile joints were preventing me from engaging the muscles I needed to.

In my appointment, Kay started by asking an extensive medical history, and for 90% of the time we talked only about joints and muscles. She did also ask about my POTS and bowel symptoms of EDS, probably just to round out her picture of my body. Despite the appointment being 90 minutes long, I still felt rushed and that I hadn't been able to include some important details, but when the picture is so big, it can be difficult to describe it all.

Next, a physical examination. She repeated much of what Prof Grahame had done when he diagnosed me, and she also watched me walking up and down the corridor. She pushed and pulled my shoulders around extensively, spending much more time here than anywhere else, concluding that my shoulders are insanely mobile and asymmetrical to boot. She remarked that there is actually no bio-mechanical anchor in my right shoulder at all, that it's only loosely tethered by soft tissue. When I showed her the way it spontaneously dislocates on demand, she was aghast, and rightly so... it's kind of gross. It's happened all my life, and doesn't cause me pain at all, so I'm still surprised when I see people grimacing.

The appointment concluded with her giving me some homework. For the next 2 weeks until I see her again, I'm to take mental note of whenever I'm sitting at the end of my range of motion, and seek to rectify that. Kay remarked that we bendies should definitely seek to maintain our flexibility, lest we stiffen up and cause ourselves more pain, but we should be looking to never 'hang' on our end of range... no standing with knees locked back, no weird sitting positions, etc.

I hope that gives you a good idea of what to expect at a physio session, as I didn't really know before Thursday! Important things to note are to wear whatever you might wear to yoga or pilates - something relatively close fitting but stretchy and comfortable. Take whatever you might have in terms of diagnosis... I took the letter detailing Prof Grahame's findings that he wrote to my GP. None of my paperwork had been transferred to the physio department in the hospital, so it was just as well I'd had the foresight to pick that letter up on my way out of the house that morning!!

If you have any questions, don't hesitate to get in touch.

On slowly becoming an exoskeleton

One thing about EDS is that we can never take the status quo for granted. The ability to walk on a Monday might be ripped out from under us on a Tuesday, Wednesday might be a great day for our joints, while Thursday is some kind of living hell, our joints stiffening up with a burning pain coursing through our bodies like wild fire. Last night I had the audacity to wear shoes that aren't up to my usual, sensible standards, and the result was crippling pain in my toe joints so painful I ended what had been an otherwise wonderful evening at the theatre in tears as I stood waiting for the bus home.

Last night, as I waited for the bus, cursing my shoes, I decided to write today's post on that very subject... all the aids I've found that help me get through the day. As I listed out in my mind the aids I'm about to tell you about, I realised that what I'm essentially about to tell you is how to become some sort of exoskeleton. And that sentence, dear reader, is at once terrifying and sort of awesome. 

Wikipedia tells us that an exoskeleton is "the external skeleton that supports and protects an animal's body". With kinesiology tape, ring splints, and bracing, it's easy for an EDSer to accumulate a myriad of things that support and protect our fragile tissues. Here are the things I've found so far to be the most helpful.

Ring splints


I'll kick off with these beauties, because frankly, they've revolutionised the way I write. I have always loved writing, but never had great stamina for it. Exams were the worst - I assumed that everybody dreaded exams for the same reason as me... the pain. It was only into my Masters degree that I really understood that nobody else suffered the same pain as me in these high-pressured fast-writing environments. 

I figured I'd give a ring splint a whirl, just on my right index finger, which normally bends backwards to a right angle when I press down on a pen or pencil. The effect was instant! Suddenly, my handwriting (which used to change in style every paragraph or so as I repositioned the pen to find a comfortable writing position) was consistent, free flowing, and painless. I recently had to write for an extended period without my ring splint and the pain was immediate.

I personally ordered my splint from a UK based independent trader who goes by the name Zomile. If you fall between two sizes (she uses the Oval8 sizing) I'd recommend opting for the larger size. I ended up getting mine resized at a local jewellers, which allowed me to get a truly custom fit. Honestly, her prices are so low (compared to most retailers) and the ring will last a long time, so I didn't mind spending a little extra to get it right. I'll definitely be returning to her if I need a replacement or any additional splints as time goes on. If you're not in the UK, then there are plenty of places you can look.

IMAK Smartgloves and Wrist Wraps

After spending a summer on my laptop while back in the UK, I developed significant pain in my wrists, and a now-permanent vulnerability seemingly related to the pisiform bone (the boney nodule that sticks out of the little finger side of the wrist). Unfortunately, typing on a laptop forces the wrist into a position that puts a lot of pressure through this joint, and three months of working on a laptop has doomed my wrists to a lifetime of clicking, cracking, and dislocating. 

Enter the IMAK Smart Glove. These fellas are pricey at around £20 per glove on Amazon.co.uk, while Amazon.com sells two for around $35 (prices and links correct for May 2015). These gloves have a soft foam splint for the top of the wrist, and what I can only describe as a little bean bag to support under the wrist, which has the dual effect of massaging and cushioning the pisiform bone. Again, if I ever have to type without the gloves aiding me, I find that I tire so much quicker, and I pay the price for the next few days.


The other IMAK product I use pretty regularly is the 'Wrist Wrap'. I only wear these when my wrists need a little extra support, which is usually just when I'm hanging out on the sofa watching telly. For some reason, this is when my sore wrists bother me most, and the beauty of the wrist wrap is that is not only keeps my wrists warm (they're worse for cold) but I can choose whether I want a lot of support or just a little.


Kinesiology Tape (aka 'elastic therapeutic tape')

Another life-saver! My osteopath introduced me to this stuff. He uses a brand called Tiger Tape, but there's also KT Tape, Rocktape, and various other cheaper brands popping up. My personal favourite at the moment is Rocktape, but the brands I named above are all pretty much equal in quality. Not all brands are good quality though, so exercise caution when choosing a cheaper brand, and be prepared to spend a little more. The adhesive quality (i.e., how long the tape stays put, and whether it causes irritation) and the quality of the fabric's elasticity are the important things to note. 


For best taping practice, I use either the method that my osteopath taught me, or I'll research methods online. Often, there are multiple ways you can tape a joint, and it can be a bit of trial and error to find what gives you support. Trust your instincts - if it doesn't feel right or feel like it's helping, it probably isn't. 

The things I commonly tape for are my ankles and knees, and plantar fasciitis. I have super floppy ankles and sometimes the weight of the bed covers is enough to throw them out for days or weeks at a time, so I tape them up to limit the range of movement and give them a little flexible support. It also means I can avoid bracing certain joints. While it's not a total alternative to bracing, the longer I can use kinesio tape, the longer I can avoid the muscle weakening effects of full on bracing... sounds good to me! 

Either way, it can be a great help for supporting vulnerable joints, and especially helpful in limiting hypermobile ROM. Both a prevention, and a cure. What more can you ask for? I would certainly recommend you talk to your physiotherapist before using kinesio tape, though. Best to be safe

SI Belt

This gizmo was given to me by my osteopath. He noticed early on that my hips were very unstable, causing me a myriad of issues. He knew I was about to go backpacking, so he tried me with this belt, and the effect was remarkable. Suddenly I went from feeling like I was walking through mud, to walking on air. I never knew walking was supposed to feel that free-flowing! It works by artificially providing the support that the pelvis is meant to naturally have. Again, maybe something to talk to your physio/osteopath/chiropractor/whatever about.


TMJ splint/night guard

One of my big EDS issues is a dislocating jaw and teeth grinding. My dentist, concerned about the damage to my teeth, got me fitted with a night guard. I have to admit, I'm prone to throwing it out in the night, but any time I can sleep with this in, the better. You might be wondering if you can just use a cheap sports mouth guard instead of a pricey custom-fitted night guard. This article explains the difference and why you should use each for its designated purpose.


Other aids

Along with things that I wear to help my joints out, I've also discovered a few other bits and bobs/tips and tricks to give my joints the best chance possible....


Not carrying a bag! 

I have some classes that require a LOT of supplies, including things like tools. Wheeling my school supplies has become the norm for me as a result, and though I initially felt a bit daft showing up wheeling a backpack behind me, I wouldn't have it any other way now.
 There are a load of good quality wheelie back packs out there, and they have the benefit of having straps for when you absolutely have to put your pack on your back. 

Vertical mouse

I was unsure of whether the vertical mouse would be a good fit for me, but now I wouldn't go back to a regular mouse! I made the switch because I found I was getting increasing wrist pain from the twisted forearm position a normal mouse requires. After a lot of research I found the mouse that seemed to best suit my needs, weighed up with the reviews I found, was the 'Evoluent VerticalMouse'. I have tiny hands, despite my 5'8" build, and the Evoluent website said that for my hand size I should go for the 'small' version of the mouse... they were right. It's perfect! Trust their size guide.


Wheat bags

Hot water bottles are useful, but I prefer the wheat bag for aching joints these days. For starters, it holds its heat for less long, which forces me to get up and reheat... A nice reminder to not get 'set' in position and keep the joints gently moving. More usefully, though, is the ability to wrap the wheat kernels around the joint you're treating, bean-bag style. I like to put a few drops of lavender on my wheat bag every so often, which is nice and relaxing. I'd also recommend putting a glass of water in the microwave with the wheat bag when you heat it, to keep the wheat from drying out too much. Not all wheat bags say this on the directions, but I do it anyway and it seems to do the trick.


Massage balls

Yet ANOTHER gift from my wonderful osteopath! This soothes and massages aching muscles. To get into my trapezius muscles I sandwich the ball between my shoulder and a wall and roll it around that way... instant relief!


Lastly... FOOTWEAR!

This is so important that I'm not sure why I left it til last. Good footwear is, of course, important for not just EDSers, but for everybody with feet, but it is especially important for us. I don't need to lecture you on this, you already know, but I wanted to give a shout out for the footwear that has served me the best over the years.... FitFlop. This British footwear brand has foot health at the core of its business model. By creating a sole that disperses the pressure through the whole sole of the foot, they ease the pain that comes along with the EDS propensity towards standing intolerance and joint pain through the whole foot. The soles they created also ensure that your foot is in the optimum position for supporting the whole skeleton, particularly the hips and spine.

I have pretty much exclusively worn FitFlops for my day-to-day footwear for around 5 years. I have flip flops, shoes, boots, pumps.... Pretty much the whole range. I really notice the difference when I wear non-FitFlop shoes now, and I pay the price in the days that follow. Again, FitFlops are pricey (isn't everything EDSers need in order to live a 'normal' life?!) but I can attest to the fact that if you look after them, they will last you YEARS. My longest lasting pair is 4 years old and have seen some serious wear. I dread the day they give up the ghost!


So there you have it. 

I'm sure as time goes on, this list will get longer, and I might find myself doing a follow up list down the line, but these are my top picks. I'll be doing other lists over the next few months, listing out my favourite naturopathic pain relief methods and the best nutritional supplements (and the evidence that supports them). Stay tuned!

On spoon theory

As I sit here, I'm exhausted. My body feels weak, my mind can't focus, and I'm struggling to form full sentences. In fact, it took three goes just now to type 'sentence' properly. My eyes are drooping, and right now, any horizontal surface looks great for sleeping. The best part? It's only 10:00.... in the morning.

A post on exhaustion and all the things that entails is just about all I can think about doing. I struggled to eat half my breakfast, I'm dreading summoning the energy to have a shower, and I haven't even got dressed today. Tea is going down pretty well, but caffeine doesn't even scratch the surface of this particular strain of tiredness.

In the EDS world, you'll hear a lot of talk about the 'three Ps': Pacing, Pain Management, and Physiotherapy. I'll be writing a post soon about the importance of all three, but my exhaustion this morning is directly related to neglecting the first 'P'.

I'm awful at pacing. Completely, utterly useless. It has a lot to do with my belief that I'm somehow invincible (which I'm not) or superhuman (which I'm also not).

I'm still young – 26 – and I have a habit of erroneously equating that age with energy and vitality. It's no wonder I do that, though, because when the rest of the world makes that assumption about you, you can't help but have that assumption rub off on you. Why can't I go out and drink with friends? Why shouldn't I make that 2 hour round trip on my Sunday off?

I'll tell you why: Spoon theory.

If you've not heard of spoon theory before, I'll simply point you to the original, as conceived by Christine Miserandino, who has Lupus, another invisible illness. http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

As Christine so deftly writes, “the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.” That is the essence of spoon theory.

I've learned shortcuts I can take to preserve my spoons as much as possible. On days when I have more spoons available to me, I spend a few hours making and freezing as many portions of food as possible. Then, on days when I can barely make the journey back from university with my eyes open, I can throw a portion of healthy, home-cooked food in the oven without chipping into tomorrow's spoons.

Another shortcut is the miracle of dry shampoo. I have long, thick hair, and washing my hair involves 10 extra minutes in the shower, followed by doing battle with the hair dryer. A quick blast of Batiste (a British dry shampoo brand, but Walgreens stocks it in the US) allows me to save a spoon for something else later that day.

But sometimes, I throw caution to the wind. I'm in my twenties, and there are days when I rebel against my limited spoons, where I turn a deliberate blind eye to pacing. Yesterday, I had the good fortune to attend an invite-only industry event for my university. I rest up the day before, got an early night, and I had everything laid out, ready for the morning. Despite my efforts to prepare, spending 6 hours on my feet, talking to industry professionals who were there to view my work, and the sensory overload that accompanied all of that left me sore, exhausted, and 100% spent. I took a cab home from the event, and immediately crawled into bed. By 8pm, I was falling asleep, nursing a weary body and aching head. Meanwhile, my colleagues were all still up and at 'em as the event turned from industry preview to launch-night party. 

All I could do was marvel at the Instagrams and Facebook posts rolling in from those I knew that were still there. It was a painful reminder of the impact my chronic illness has on not only my body, but the opportunities I'm able to enjoy. 

As Christine says, “Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to.”

So here I am, 10am on a Tuesday morning. I already used most of today's spoons yesterday, but I have to somehow muster more energy for a meeting across town later today. What I do know is that having the language to understand and communicate these things has been helpful to me... it'll just take some time to iron out strategies to cope with the limited spoons I have each day. 

On the long road to diagnosis

Considering that I've already written about my experience of the gastrointestinal complications of EDS, you might not think that I could get much more personal... but you'd be wrong!

I want to outline my path to my formal diagnosis of EDS-HM. Anybody who has been on this road for any length of time will understand why it's so personal. That said, it's a long story that I'm going to cut significantly short. Forgive the brevity!

Age 12, I experienced a very hasty decline into disability. Everything hurt! It was scary, and no doctors knew what was wrong. I felt like a never ending real-life episode of House. GPs, paediatricians, neurologists, orthopaedic surgeons, podiatrists, gait analysts, physiotherapists, rheumatologists, osteopaths, chiropractors, McTimoney chiropractors, kinesiologists, nutritionists, homeopaths, Amatsu therapists, massage therapists, acupuncturists, neuro-linguistic programming, reflexologists, and at one point, a healer (seriously, we got desperate). That list is not even complete, but after a certain point, the names get muddled and drop off into the far reaches of your mind.

The result was a never ending chain of misdiagnoses, red herrings, and a hell of a lot of people insisting it was all in my head. Stepping back, we see it all so much more clearly now.

My symptoms up until that decline at the age of 12 were as you'd expect: a life long battle with my digestion, skin healing and bruising issues that were particularly noticeable because of what a clumsy child I was, a tendency to not pick my legs up properly, and an awkward gait.

As adolescence approached, my joints declined rapidly, almost overnight, and I became ill. Very ill. There are too many symptoms to go into detail here, but they involved Chronic Fatigue-like symptoms, severe joint pain that at times left me bed-bound (even on the strongest pain medication they allow 12 year olds to take), muscle spasms, Fibromyalgia.... you get the picture. This, combined with the other symptoms I presented with from birth, make total sense as EDS, but none of the countless specialists we saw mentioned it once.

After adolescence, the pain started to subside, with bad flare ups occurring only once every couple of months. I assumed the dark days were coming to a close, and began exercising with my new-found mobility in earnest. I built up a lot of strength in this time, and it is that muscle building that I put my good health in my early twenties down to. In the last couple of years, I've begun to decline again. Not quite so spectacularly as when I was 12, mind.

The psychological effect is significant. I've been down this road before, so knowing how bad it can get is enough to get me pretty down. It's different this time around though. Rather than being suddenly immobilised by my own body, I feel my joints wearing down, month on month. I'm getting clickier and crackier than I've ever been, and joints like my jaw, shoulder, ankle and knee have a habit of dislocating. It was in this state that I finally made an appointment to confirm my osteopath's suspicions that I had some form of EDS.

I was lucky enough to make an appointment with the man who has fought so hard to have EDS recognised in the past 40 years: Professor Rodney Grahame. He confirmed the diagnosis after 80 minutes of rigorous testing and never-ending questions.

Prof Grahame was matter of fact, and extremely to the point, but once he had got his enormous list of questions out of the way and began his examinations he softened a lot. There weren't many things that he asked that I was surprised about, but then, I'd done my research! His tests included checking for marfanoid habitus by measuring my arm span/height ratio, the lengths of my hands and feet, and checking the roof of my mouth for a high arch palette. Then there was the infamous Beighton test, which I passed with flying colours, as it were. He checked other joints across my body too, and concluded that I am, in fact, an owl, such is the insane flexibility of my neck.

He noted I have "hypermobility plus" in many joints, regular hypermobility elsewhere, and totally normal elbows (poor elbows didn't get the memo, evidently!). He essentially said I was a textbook EDS-HM patient, with pretty much most of the hallmarks: significant GI involvement, significant skin involvement, hypermobility and chronic pain, partial marfanoid habitus, autonomic dysfunction and a strong family history on my mother's side. My mum attended the appointment with me, and he directed a lot of questions towards her with regard to my early childhood and her own symptoms.

Coming out of that appointment, both Mum and I were a bundle of mixed emotions. One thing I knew for sure though: This diagnosis won't change the way I live my life. From 14 years of knowing my body and its limits, and coming up with my own coping strategies, a diagnosis is no big revelation for me... It simply opens doors for me to seek more specialised treatment.

What's your story? Every EDSer has one. I could write a book about mine – about the negativity from disbelieving family members and peers, about how my experience proved to me how resilient the human spirit really is, and how ultimately the pain of my teen years impacted my outlook on life for the better. Maybe some day I will find the words to talk about that element of EDS too, but for now, I'd love to hear your experience. Maybe we can fill a book with our stories. We're all gloriously different, aren't we?

On GI problems

Seeing as we're fully acquainted now, with my first post detailing the good (lovely soft skin) the bad (dislocating jaw) and the ugly (ahem – gastrointestinal issues), I thought I'd dive right in and talk about the shit us EDSers have to deal (pun fully intended, and they're not stopping any time soon!) with in the toilet department. Once we've got this out of the way we can all breathe a sigh of relief! Prepare yourselves, and stay tuned for the giveaway at the end of the post!

Put simply, we have a bum deal (see?) when it comes to issues of the gut. All the symptoms of Irritable Bowel Syndrome (IBS) are present and correct, but it doesn't stop there. We're talking issues along the length of the GI tract, from input to output, as it were. Let's start from the top:

G.E.R.D aka, Gastroesophageal Reflux Disease

For as long as I can remember, I've had what I could only ever describe as a 'burny throat' feeling. It's intermittent, and I've never pinned down the trigger. It seems to be random, so far as I can tell, and a bout of it can last anywhere between a few hours and a few days. In essence, it feels like I have a toxic fireball stuck in my throat, and no amount of swallowing, drinking, or eating will help the discomfort pass.

Finally, at the appointment I had with Professor Grahame at the St John St Elizabeth Hospital in London (the appointment that saw my diagnosis of EDS finally made official, which I'll tell you about in an upcoming post!), I was able to describe the burny throat feeling to him. He instantly said “Yes – that's Gastroesophageal Reflux Disease – perfectly common with EDS”.

Essentially in EDSers it's caused by laxity in the oesophageal sphincter, meaning the strong acidity in the stomach isn't kept in its place. So now you know!

Early Satiety

This is, I assume, because of the GI dysmotility issue (see below) that we have, and it appears to be par for the course. Like most EDS issues, I had no idea it was a symptom until I started researching the seemingly never ending list of crap (there I go again) that we put up with in our daily lives. It's always the small things that surprise me the most, and usually things I thought were completely normal. Let me tell you, finding out that half your body functions are far from completely normal is a trip.

Anyway – early satiety, or feeling full after eating very little, is a symptom, it turns out. My mum, my sister and I have all been this way our entire lives, much to the disdain of my father who seemingly has the opposite issue. Family meals usually involved the three of us eating half of what was on our plates, while my father happily polished our plates off for us after wolfing his own down.

Gastrointestinal (GI) Dysmotility and IBS

GI Dysmotility, for EDSers at least, is a clear cut case of faulty collagen, as collagen is instrumental in the biomechanical properties of the GI tract. Our intestines simply don't move the production line along as they should. This can also lead to bloating, which is unfortunate. Nobody likes feeling bloated, but it really is the least of our problems! Then there's the irregularities of our bowel movements (we're well and truly in too-much-information territory here... sorry guys) which is closely linked to the IBS symptoms we present with, including inconsistencies in 'output', swinging like a pendulum between constipation and diarrhoea, and intolerance of food groups - in my case dairy. Which sucks, because I love cheese.

The GI problems are also linked to dysautonomia, which I'll talk about in another dedicated post. There is a lot to say on the subject of EDS and FGID (Functional Gastrointestinal Disorders), and I'll happily let the pros tell you all about it here.

I've never taken prescription medication for my IBS symptoms. This is in part due to my personal brand of stubbornness... some kind of attempt to be super human and rely only on home remedies and lifestyle changes to combat most ailments. I didn't even get myself antibiotics for the strep throat I suffered before Christmas, a decision that came back to haunt me when the bacteria ended up hitting my chest pretty hard on New Year's Day. Miserably, I sloped off to the doctor, who sounded my chest, slapped me on the wrist for not going in earlier, and packed me off to the pharmacy with a prescription for Clarithromycin.

Those antibiotics led me to a discovery, though. After my round of Clarithromycin was over, I started a round of probiotics. My tummy-woes were bad enough without the antibiotics killing off all the good bacteria in my stomach!

But more than simply replacing the good-gut-flora lost after taking the antibiotics, the probiotics seemed to help with everything, particularly the bloating and . The IBS symptoms appeared to subside, with the probiotics even helping with the ill-effect of eating dairy cheese (my dietary nemesis).

In the past week, I've been trying a new brand of probiotics called Microbiome Plus+ GI. I've tried all manner of probiotics, including BioKult, Biotic Balance, and straight-up Acidophilus.

I'm a week in, and so far I'm fairly impressed. When they arrived, I was a little alarmed at the size of the one-month-supply package. There are four boxes, each containing a week's supply, and each of those boxes is larger than the entire one-month supply box of my previous probiotics. Part of the reason for this is that the dose is twice-daily, and it's not just a probiotic you're taking - they also give you a prebiotic caplet to take at the same time. Each box contains two blister packs, one for AM and one for PM.

The amount of good bacteria in Microbiome Plus is lower than some other brands I've tried, at 3.5 billion cfu of Lactobacillus Reuteri. For comparison, the last brand I used (Biotic Balance) has 5.8 billion cfu of Lactobacillus Acidophilus, 5.8 billion cfu of Lactobacillus Rhamnosus, 5.8 billion cfu of Bifidobacterium Longum, and 2.6 billion cfu of Saccharomyces Boulardii. Whether that brand is simply overkill, or if Microbiome Plus is not quite up to the mark, I'm not sure - it's a different strain in Microbiome, and I'm not up on my bacteria knowledge enough to know what the different strains represent!

What I do know is that Microbiome is up to the challenge of eliminating the post-meal (especially post-dairy) bloat, which has caused severe pain in the past. It doesn't seem quite so robust in terms of regulating output, but that's only when comparing it to the previous super-charged probiotic. On Microbiome, I'm still leaps ahead of where my body would be if I were on no probiotics at all.

Another pro is that unlike some probiotics, you don't need to keep it refrigerated, which is good for travelling. I decided to label each day's tablets, just to keep track of the twice daily dose, which has to be taken with a meal. The size of the tablets doesn't bother me, but I know we're all different when it comes to that - my Mum would probably try and chop the prebiotic tablet in half!

I have three one-month supplies of Microbiome's probiotic to give away this week. If you want to give these probiotics a go, email jessie.estella@gmail.com and tell me the three awful puns I dropped in to this post. This one's for US-based readers only, I'm afraid, as the coupon-codes I've been given are valid only for contiguous US amazon.com accounts.